Lio Spinelli

Tomorrow Lio goes in for surgery on his super leg.  It’s been a long time coming.  Too long in fact.  We had originally planned on surgery for a couple of days after Christmas but then the surgeon scheduled to do the operation, someone I trust enormously, started expressing some reservation that even if it did work (which was itself no certainty) it might not really save that many months in a limb lengthening frame.  So I was prompted to reconsider.  We saw five surgeons in London, most of them connected in some way to Great Ormond Street Hospital, to see what they could offer.  All of them were proposing some combination of lengthening and straightening at various intervals during Lio’s growing years.  While they all mentioned the possibility of stunting the growth on Lio’s uninjured leg to save him some lengthening on the super leg in the future, some were more keen to avoid that than others.  Given that I’ve worked extremely hard to not have that happen up until now I naturally gravitated to the surgeons who shared that disposition.  Neither Lio nor I want to see the good leg stunted in the service of the injured one.

Still, none of the surgeons we spoke with seemed to think that trying to coax another couple of centimeters of normal straight growth out of the super leg was worth doing.  This meant that we were going to have to resign ourselves to the idea that there was never going to be any more good growth in his super leg, that at 7 years old it was going to be surgically forced to not grow any more, and that all the length we’d ever get out of it from this point onward would have to be through unpleasant artificial lengthening.  I simply hate to think of the rest of his childhood as punctuated by episodes in a leg frame.  This has been very difficult psychological hurdle to get us over.  But, after considering everything (and I have considered everything) I think that it’s the best way forward with Lio’s leg.  At least this way we’ll be able to plan things and prepare for surgeries rather than anxiously checking every few months to see how it’s growing.  The limbo of waiting and seeing, coupled with the torturous worry about whether or not the current length discrepancy and angular deformity are causing (or are about to cause) any problems for his knee, hip, ankle or spine, is almost as stressful as the decision to stop the growth completely.

There were, in the end, two surgeons who seemed to have the right kind of experience and ideas.  One with an excellent bedside manner, communication skills and a desire to answer questions, but with a slightly more conservative and variable approach to Lio’s situation, while the other was extremely confident in what he could do, and came with the recommendation of the director of Great Ormond Street Hospital for Lio’s particular issues, but was slow to respond and sometimes did not respond at all.  I had first decided on the good communicator.  But then, as fate would have it, a misinterpretation of voicemail led to Lio being booked in for surgery with the other surgeon as well.  After months of doctor visits and doctor phone calls and doctor emails and sleepless night after sleepless night I had finally made what I thought was the right decision—only to be thrown back into it all again because of someone’s administrative error.  I was exhausted and collapsed to the floor with the letter still in my hand.  Rather than get (too) upset by this—I was going to have to cancel with one of the surgeons and I did not want to alienate either one of them because I had no way of knowing who Lio might need in the future—I decided to take it as an opportunity to carefully reassess everything.

I put every scrap of paper I’d scribbled on about the two of them all around me on the floor, along with all their reports and emails, and I read through everything making a careful list of absolutely every advantage and disadvantage to the both of them.  It was brought home to me in that little exercise how well and efficiently Sasha and I made decisions together, how we would talk over the details, pull out the relevant issues, banish each others’ unwarranted fears and distill things down to their essence—and then just decide and not look back.  I’ve missed that way of talking things through more than anything these past few months.  Earlier on in our ordeal I seemed to have had an innate ability for making hard decisions quickly and well, but this time I was stumbling.  There was too much to process and there was no way I was going to become an amateur expert in paediatric orthopedic surgery overnight.  So without Sasha to bounce things off of I went with what my lists were telling me and chose the one with the highest recommendation from the director of the hospital.  I’m now very happy with this, but I will be even happier tomorrow when Lio’s surgery is done.  Please keep us in your thoughts and prayers on Wednesday the 18th.

While I’m extremely pleased we have something settled I’m trying to not let the worry that we’ve waited too long and his leg has grown even more crooked get to me too much.  Having settled on a date for surgery I’ve been trying not to let the preparation for it dominate our lives.  We’ve been distracting ourselves by getting reacquainted with playmates we haven’t seen since before the crash and focusing on a couple of music concerts Lio has had recently.  In the first one, Lio’s school’s Spring Tea, he played a couple of piano pieces.  He had just learned “Sea Chanty” (“Drunken Sailor”) from his wonderful new piano teacher and the other was a piece he had learned from his grandfather Nigel months ago called “Soul of Man” (“Canaan’s Land”).  During the second performance, the one I was at, he got a bit muddled in the middle of “Sea Chanty” but recovered very well and played “Soul of Man” perfectly—it was especially moving for me to hear Lio play that one in public as it is a song that has touched us all at some point during the past two years and was a song we played while burying Sasha’s ashes.  Lio also played in his second big violin concert last weekend at the large secondary school in Lewes and again I was pleased beyond words to see him smile as he took his bow.  He really likes music and has a real aptitude for it.  Some mornings he’ll even pick up his violin without my prompting, and when that happens my heart swells.  I can’t help but think how happy that must make Sasha, she who was so talented in so many things (music included).  I regret that I never did an instrument when I was a younger because I struggle to help Lio’s now when he’s wrestling with music.  But honestly I don’t really care how much he gets right or wrong, how well he plays or doesn’t; I am just extremely grateful that he is doing it, that he gets some pleasure out of it, and that when he’s doing it his other issues recede.  Nothing could make me happier.

But I think if you were to ask Lio what his musical highlight of the past several months has been he would tell you it was singing in the choir at Westminster Cathedral (the big Catholic Cathedral in London).  Lio had been mentioning that he might like to start singing so I started googling around for choirs near-by.  I came across an open day happening at Westminster Cathedral Choir School where boys aged 6 to 8 got to spend an afternoon and an evening wondering around the school, rehearsing with the choristers and then actually singing with them in the mass at 6:00.  When Lio processed in, limping only slightly, hands folded, wearing black vestments, he simply beamed the perfect image of a choir boy.  When he added his little voice to the Latin hymns which filled the enormous victorian church I was again overcome with joy for what we have.  As we left and headed for the train I asked him what he liked the most about his day at the choir school.  He said without hesitation, “All of it.  I loved every bit of it.”  I don’t know if he’s fully understood that it’s a boarding school and what that might mean, but I’m happy that he had the experience.

I’m glad he’s into his music because it’s the kind of thing he can do during his bouts of recovering from surgery.  The current operation is relatively minor compared to what’s in store for him in the autumn when we will likely begin the leg lengthening and straightening.  With a view to him having to spend some time in a wheelchair and in a walking frame then I’ve been looking for a new house, one with a bathroom and a bedroom on the ground floor.  But when Lio learned that we might be moving he was distraught.  He simply doesn’t want to leave our little house in Lewes, the house that was our house as a happy family, the three of us together.

It would also be difficult for me because the idea of moving to another house to accommodate a wheelchair stings a bit, it seems a slap in the face to the attitude that’s gotten us this far, an attitude which embraces possibilities rather than limitations.  But having made the decision to stop the growth on his leg there are some basic realities which have to be dealt with.  One of those is that a house with a bedroom and a bathroom on the ground floor will make our lives much easier.  And it’s also a pretty good time to buy a house and get mortgages.  So in the end, to help soothe Lio’s anxiety, I promised him there and then that we would never sell our house in Lewes and that it would always be here for him whenever he wanted.  While this did calm him somewhat the thing that really made him warm to the idea was actually going out to Kingston where the potential house is (the village where he goes to school) and playing in the garden of what might be our new house.  The garden is a mess, in fact it looks as if nothing has been done to the whole house in about 30 years, but Lio dove under bushes and climbed trees and imagined what we could do with the garden shed (he reckons we should turn it into a pizzeria, with seating for three).  That little visit was certainly the right thing to do, now it’s just a matter of mortgages and interim payments from the law suits.  It’s also a project that I’ll look forward and it makes me happy to remember that Sasha and I had talked for years about buying an old house and fixing it up.

The months since Christmas haven’t been all doctors, therapists, law suits, music and real estate though.  When the opportunity presents itself to have real fun we don’t let it pass.  I had thought of having Lio’s surgery during Lio’s half-term holiday week but when I realized it wasn’t going to happen I booked us flights to Crete.  Lio’s grandmother Trudy came and while we saw more snow than we did sun it was an enchanting little escape where (because of the time of year) it felt like we were the only tourists.  Lio hiked up to hill-top ruins and we played hide-and-seek among the ancient stone columns with the aid of his Christmas-present walkie-talkies.  And as he snuck under a barrier to sit on the actual 4,000-year-old stone throne of King Minos of Knossoss I forgot his leg and saw only a happy 7-year-old doing something fun if a bit mischievous now and with lots more adventures ahead of him.

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